Surviving Acute Myeloid Leukemia: A Young Data Journalist’s Journey to Remission

2023-10-29 04:00:00

Data journalist and member of the research team of our Bureau of Investigation, Charles Mathieu fought a serious form of leukemia in 2023. Now in remission, he tells us regarding the ordeals he has gone through in recent months.

I put my life on hold six months ago, at 25 years old. And I still don’t know when she will return to normal. Everything stopped on March 18. The diagnosis was clear: acute myeloid leukemia, one of the worst forms of this cancer, which mainly affects the elderly.

I went to the Jean-Talon Hospital in Montreal on a cold Saturday morning with small red spots on my body, general fatigue and worrying bleeding in my mouth.

“Your white blood cells have a value of 200,000 cells/mm3, while the average is between 4,000 and 11,000. It looks like leukemia,” the doctor told me.

Time has stopped. Words failed me. While my partner had tears in her eyes and cried, I stared into space. I was practically in denial.

I didn’t understand what was happening, why this was happening to me now, when I had the wind in my sails in my professional and personal life.

Thousands of questions ran through my mind. Will I die? Will I get through this? Will I have to stop “living” for six months, a year, or even five years? Nothing was clear, and nothing was clear for quite a while.

Rare in young people

My case is not unique. Two in five Canadians will get cancer in their lifetime, and one in four will die from it.

I was diagnosed with acute myelogenous leukemia (AML), one of the most dangerous, if not the most dangerous leukemias. In short, my immune system was letting immature white blood cells, called “blasts,” grow too fast in my bone marrow and blood.

The Quebec government estimates that there will be only 11 cases of AML in 2020 among young people aged 18 to 29. In total in 2020, 484 cases were reported, especially among those aged 50 to 84.

This type of cancer is treated with chemotherapy and/or radiotherapy and possibly with a stem cell transplant, which would replace a diseased immune system. In my case, I received all three.

The hospital staff recorded my blood data every day to measure the progress of the treatment. Photo Courtesy

Immune system flat

Two days following my arrival at the Sacré-Cœur-de-Montreal hospital, I began an intravenous chemo treatment which lasted seven days.

I then had to stay in the hospital while waiting for my body to get better. Anyway, I was so weak and tired that I mightn’t have left.

The chemo also completely knocked down my immune system, a condition called neutropenia. Only my girlfriend, my sister and my parents might come to visit me, and even then, they had to wear a mask and keep their distance.

This first treatment worked and allowed me to reach remission following 30 days. I was lucky to receive a Nintendo Switch from my father, it helped me pass the time for a month.

I was able to go out for two weeks, spend time with my fiancée and my cat, and eat whatever I wanted following a month of hospital food. What a joy to enjoy shish-taouk (with extra garlic sauce and an extra pita) three times in the same week.

I celebrated my 26th birthday in the hospital, in the middle of chemo treatments. Photo Léa Groulx-Comeau

Stem cell transplant

To reduce the chances of the cancer coming back, I had to undergo two more chemo treatments in Montreal, in addition to a stem cell transplant at the Integrated Cancer Center and the Hôpital de l’Enfant-Jésus in Quebec. .

This transplant was one of the most important ordeals of my life. “We give a treatment like yours once a year,” the pharmacist in charge of my case told me. She wasn’t joking.

The goal was to destroy several types of cells in my blood, so that my new bone marrow might generate new ones.

I tried to capture the moment as I received my stem cells. It is indeed an N95 mask that fits on my head. Photo Léa Groulx-Comeau

I did three days of intense radiotherapy, with two sessions per day. Then, following a day of rest, I had to face three more days of very strong chemo.

The fatigue and nausea were worse than anything I had experienced before.

My sister was my stem cell donor. I almost believed that the good Lord existed when he was told to me. The chances of a brother and sister being 100% compatible are between 20 and 25%.

I received the new stem cells intravenously on August 1st.

Here are the stem cells (right) that were extracted from my sister Catherine in order to give them to me. There was a huge amount, according to my doctor. So, extras were placed in the freezer, just in case. Plasma was also collected (left). Photo Courtesy

The next two weeks, however, were difficult. I had inflammation in my mouth which prevented me from eating for a week and a half. I had to feed myself with protein shakes, which allowed me to avoid having to be fed intravenously.

I lost my hair, a lot of my muscle mass and most of my energy from before all this.

Fantastic care

We often hear regarding horror stories and long waits in hospitals, but I think I received fantastic care.

After receiving the initial diagnosis, I was placed in a small room within an hour. For the next few weeks, the staff took good care of me and answered my 1000 questions from a lost guy who has almost no idea what’s coming.

During my month-long stay in the hospital, I played a lot of video games to pass the time. Photo Courtesy

On August 21, following a month of hospitalization, my condition did not yet allow me to return home. I had to live in Quebec for two more months.

I felt like I was in the body of a 90 year old. I no longer recognized myself. Everything was breathless, even going up stairs.

Recovery is going well, but it is difficult. The most I might do as far as exercise was concerned was a 1.5 mile walk.

Today I’m trying to go back to training by lifting five-pound dumbbells.

Me and my fiancée, Léa, when I left the hospital. The staff rang a bell for me to celebrate the end of my treatments and the start of something new. Here I had just made it ring. It was a very proud moment. Photo Courtesy

Like a mountain

I had been told that rehabilitation is a rollercoaster ride, but I never would have believed that the mountain was going to be so high and so imposing.

Since I am currently immunosuppressed, I will have to wait another three to six months to eat at a restaurant, in order to avoid the risk of contamination.

However, it is much better than being in the hospital. Also, technically I don’t have any cancer in me anymore, so that’s good news!

I can also gradually start working once more and spend time with my loved ones. I can never thank my fiancée, my father, my mother, my sister, my brother, my grandparents and everyone who supported me during my stays in the hospital enough. Without them, I don’t know where I would be.

It was finally on October 15 that I was able to return home.

I still have four and a half years to wait to be sure I’m cured, but I’m taking it one day at a time, and enjoying every moment like it’s my last. Just like having cancer, it completely changes the way you see life.

Do you have any information to share with us regarding this story?

Write to us at or call us directly at 1 800-63SCOOP.

1698565476
#Testimony #faced #worst #forms #cancer